Connection is the best kind of medicine for parents. A RORA variant diagnosis can be overwhelming. We’re here to help you understand what it means from a parent’s perspective. Our parent network can help you navigate the grief, love, and confusion from our lived experiences.

A RORA gene variant is not what you were expecting, and we are here for you. No matter where you are in your RORA journey, we are here to connect. We hold space for the highs and lows that come with rare disease parenting and can offer the resources and networks that have supported our journeys.

Whether it’s a Zoom chat with RORA families or sifting through new developments with our research heroes, we can navigate this together. You don’t need to figure it all out at once - let’s take it step by step, together.